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Friday, July 26, 2013

Why It Is Important: McNair Kids Camp Fund 2013

It reminded me why getting the
kids to Camp Korey is so vital. Why having something to look forward to, and creating
memories to hang onto, is so important.

Disney Channel & Iphone make it bearable

Madison and I started the day
before the sun came up. We were on the road by 5am, and at our hospital by 6.
By 7 she was in pre-op, where finding a vein willing to cooperate took two
sticks, digging, and two different people to make it happen.

Madison made sure to get the
name of the medic-turned-IV-placer so she could plug her into her phone, for
next time.

Yes, my 16 year old
daughter has a list of blood takers and IV placers for every hospital and lab
we need to go to. Knowing when we find one that can make it happen, as
painlessly as possible, we ask for them again.

There will always be the need.

By 7:45, she was doped up on
Versed and rolling down the hall, away from me. I watched and marveled how
"old hat" this is for her. How she casually (albeit a little
drunkenly) chats with the nurses wheeling her away, and how, without trepidation
she tells me she will see me in a bit. Then I sighed, because ever so often it
hits me....this isn't "normal"...and she is amazing, brave, and
incredibly forgiving to us all for what she must endure at our hands.

As I walked to the all too
familiar waiting room, and went through the routine of telling (the same nice
lady I see almost every time) my child's name, I found myself looking for some
spark of recognition from her. She seems to be one of the few that doesn't
recognize me on sight. But then, she hasn't met my children...

They are always in an
operating room when I am there.

They are the spark people need
to recall that last encounter...they are the reasons to remember. I smile to
myself thinking of the impact they have, and how they always have something to
say or do that makes people smile.

I follow my usual routine of
running to Starbucks down the hall, grabbing (more) coffee and something to
eat, and willing it to take at least a few minutes so I am not left with my
thoughts, and the less than comfortable chairs, for too long. I wander out in
the hall, hoping to see someone I know (which happens far too frequently,
considering I am standing in a hospital)...someone who can fill a few more of
the minutes I have to wait. I wander for a few minutes, then hurry back to the
waiting room, worried I might take too long and miss the doctor. This time, I
see the surgeon as he hurries down the hall to join in on the procedure,
already in progress in the OR. I know his part won't take long, so I make my
way back and sit down.

Sometimes, the plans we make
going in are not always how it pans out.

The plan was to:

1. Put her under to scope her
esophagus and stomach to see how our control of reflux was going, and to make
sure we didn't see any signs of issues from the iron she takes, or yeast, due
to all the antibiotics she is on.

2. To remove the long feeding
tube that was placed after her surgery in April, that we had been unable to
remove here at home. We tried twice, with the second attempt leading to another
abscess.

3. To have our surgeon fully
examine the g-tube tract for signs of another fistula, or an explanation for
the latest abscess.

And 4. To replace the long
g-tube with what she has always had, called a "button" g-tube.

Madi was desperate to get that
long tube out and her old one back in. Desperate!! The long one hangs down a
ways, doesn't clamp (leading to messes when trying to hook up to her feeding
pump), is more obvious, and in general, just isn't what she wants. In this
life, she has to put up with enough, so we do all we can to make it as
unobtrusive as possible.

How things actually went:

1. We didn't have the
anesthesiologist we were told we would have. Not a huge deal, but I have gotten
used to not having to explain everything and convince them we should do what we
know works. I hadn't prepped for the discussion, and with that, I did not
advocate for Madison as well as I should have.

2. While the scope went as
planned, there was a new finding. A nodule was found that hasn't been seen
before, but we are pretty sure it's something that happens sometimes when you
have been on PPI's (reflux meds) for too long. Lord knows she has, and we
talked again about the need to do surgery to hopefully stop the reflux and
allow us to get off the medication. Biopsies were done, so we will know more
next week.

3. The surgeons inspection of
the g-tube tract was revealing. While not another fistula, there is a fissure
(tear) running from the stomach to about halfway up the tract. Barring us
allowing the g-tube tract to close, something we cannot do, the healing process
is going to take time. How much is anyone's guess.

4. This fissure means we could
not switch her back to her old g-tube type, and another long tube was placed.
The button type would have put enough pressure on the stomach side of the tube,
it would cause more tearing and there is a real risk of the balloon that holds
it in place moving into the tract and causing more damage.

I knew immediately that
Madison was going to be upset with this change in plans. It was, after all, the
ONLY part that she cared about. My feeling that she would wake up from
anesthesia and immediately pat her stomach to feel the new tube, and be
confused when it wasn't there, apparently is exactly as it went.

I had to chuckle at our
doctors a little...our GI and surgeon are friends, and according to our GI,
they apparently had a bit of a fight over Miss Madison. GI was all ready to
place the button g-tube when the surgeon came in and promptly told him no way.
GI insisted he was going to do what his patient wanted....surgeon said no....GI
insisted...surgeon threatened to walk out...and they were at an impasse. Once
the surgeon found the fissure, even GI couldn't disagree that the button would
cause more problems, but he wanted me to make sure Madi knew he fought for her,
and was bullied by our surgeon....LOL!

As expected, Madi was a mess
when I got back to recovery and could explain what happened. I haven't seen her
that sad in a long time. And my heart broke. And there was not a thing I could
do to make it better.

And then....we talked about
camp. Little by little, as we were discharged and made our way home, she smiled
a little more, and distracted herself with camp plans. The Dr. Pepper with
"good ice" from Sonic helped too.

What happened, in the grand
scheme of things, was not a big deal. She has done the long tube for 3 months,
and put up with it like a champ, and she can do it again. This was one of those
quality of life moments....she needed the things to go back to the way they
were... she needed this "win". She was disappointed, and sad,
and faced with a set back she didn't need.

She also proceeded to do what
Madi does so amazingly well....she quickly started getting "over it".

My day wasn't done, oh no!!

A drive home, a switch out of
children, and I was on my way back with Chance. Wednesday was the day we met
with our pain doctor to try and get him some relief and a plan. For reasons we
still don't understand, Chance has been in a decline since January, that has included
a significant decrease in physical stamina, constant muscle pain, a week long
episode in April of severe muscle pain, and, as time has gone on and his body
has been stressed, Neuro issues, GI problems, and an increase in fatigue.

After consulting with everyone
I can think of, making changes in physical therapy routines, and testing what
we could think to test, he & I were finally faced with the need to start
treating the symptoms and hoping for some relief.

The appointment went well, and
we have a plan that we hope might work. It won't fix whatever the problem is
exactly, but at this point, pain relief is a huge need.

Distraction is too. Camp Korey is an awesome distraction, coming exactly
when he needs it. Coming exactly when I need it too.

Thursday, my inadequate
advocating for Madison came back to bite us on the butt, when she woke with
every muscle in her body (even her tongue) in severe pain!! It was a long day,
with lots of phone calls and worry, but we finally were able to determine that
she was given something she hadn't had before, and that is likely
causing this problem. Once we figured that out, pain meds were given, and by
evening she was in much better shape.

Days like these, they are
hard, but they remind us to hang on even tighter to those things that mean so
much to us. We are so very grateful for each and everyone one of them.

We are steadily making our way
to this goal....with your help!! We thank you, from the bottom of our hearts,
for your support.

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About Us

I am Heather, married to my high school sweetheart, Michael, for 28 years and we are the proud parents to three amazing young people. Chance is 23, Madison is 20, and Abigail is 18. All three are awesome young people that any mom would be proud of. They are kind, giving, loving, resilient, confident and selfless. They all also deal daily with the effects of Mitochondrial Disease (Mito for short). While they have Mito, they are not defined by it. We welcome you to this exceptional life we lead!!!